Tess Is Not Alone: A USP7 Story

Bo Bigelow is the chairman of the Foundation for USP7-Related Diseases (usp7.org). He and his wife are the parents of two children, one of whom, Tess, has an ultra-rare genetic disorder. Bo has blazed new trails in advocating for people with undiagnosed diseases. Upon learning that Tess had a mutation in her USP7 gene, Bo and his wife believed that she was the only one of her kind in the world. But he wrote a blog post about Tess, took to social media, and within 24 hours discovered a team of researchers who were working on the USP7 gene and the disorder that Tess has. Tess was the eighth known patient in the world. Through his podcast and blog Stronger Every Day, since 2015 Bo has helped build their patient group to over twenty cases worldwide. To find more patients, he made a short film called "Tess Is Not Alone: A USP7 Story." He and his wife started their foundation in 2017. Their mission is to cure USP7-related diseases. Bo has been interviewed by The Washington Post, ABC News, NBC News, NPR, KQED, The Atlantic, The Huffington Post, and The Seattle Times for stories about Tess.

Bo is also a co-founder of DISORDER: The Rare Disease Film Festival (rarediseasefilmfestival.com). In Boston in 2017, the festival's inaugural year, it screened 30 films, featured 15 speakers, and brought together over 20 sponsors and promotional partners.